Connecting with strangers helps calm caregivers

As I sit quietly today and read each of your posts over the past 2 weeks I, too, find myself with feelings of anger and sadness.

In a disease like Alzheimer's, there's no cure, the journey is unpredictable, and absolute solutions are non-existent. I feel sad that too often there isn't a fix for the challenges you're going through. And that so many of you must endure the physical exhaustion and emotional demands of caregiving, as well as the isolation it creates — even from your own family members. I'm angry that this disease is largely ignored by so many, including our own healthcare system.

For each of you, I wish to ease some pain. Often I can't. No one can. Humbly, what I can offer you caregivers is information and education to aid in understanding the disease. I can reinforce seeking support and respite services. I can discuss insights for managing behaviors and strategies for communication. I can provide a forum for each of you to know that you aren't alone and validate both your experiences and feelings. In some small way maybe I can offer thoughts about tapping into one's inner strength to accept and cope with this unchangeable situation.

But today I'm doing what I often ask of you. I'm going to simply be with my emotions — my anger, sadness and helplessness. Yet, for me, relief comes in knowing that all emotions are cyclic. In other words, none of us can have the experience of sadness without also having a relationship with happiness. Nor can we know what calmness is without having feelings of anger to compare it with. I have some comfort in knowing these emotions will pass.

Blog readers and writers, thank you again and again for sharing your emotions, your humanness, in all its vulnerability. Most importantly, thank you for being there for one another. When anger and sadness set in for you, believe above all else, it is our human connectedness that brings us back around to some sense of contentment or happiness.

"Look at all of us. We so desperately need someone to talk to we talk to strangers. And I, for one, am grateful for you all."

Last week Jim asked about Alzheimer's Caregiver Support Groups in his area of Rochester, MN. Jim there is a support group offered through Mayo Clinic and the Alzheimer's Association that meets twice a month. For more information call 507-289-3950. For those of you looking for a support group in your area, I recommend you call the Alzheimer's Association Information Help-line at 1-800-272-3900, or go to www.alz.org

Angela

September 5, 2012 3:18 p.m.

I live in the Rochester, MN area. How can I find out about Alzheimer support groups in this area?

Jim

November 17, 2011 2:13 p.m.

dear blogger,i have sat and read all your posts..i have tears in my eyes because you all have said the same things that i am feeling and dealing with every day..i thought i was alone and isolated..i recently lost my father and going thru a divorce and have been abondond by my family..they dont want to hear the truth about my mother..she has been diagnosed with early stages right now..i have 2 young daughters,sometimes it feels like i have 3....i just want to say thank you for sharing your life with me..it is very much appreciated.and very helpfuul to me right now..i know that i am not alone..

Cindy

November 4, 2011 8:17 a.m.

Dear Pat,
The best thing I could do for you is pray,which I did. I prayed that you would receive help in healing your husband,and that he would respond. From what I know to be true,the withdrawal will only last so long.It will have an end,and then,perhaps,the doc will be able to give your husband something for the tardive dis.--Also,it never hurts to get a second opinion.My best to you in your important work.God bless.-Mare

Mare

October 23, 2011 1:12 p.m.

For those of you struggling as caregivers for people with Alzheimer's- watch this video. It has given me some hope and the meditation is suggests to do is backed with new research. I highly recommend it. Best wishes.
http://www.youtube.com/watch?v=eVETSxQADy0

Sarah

October 5, 2011 4:43 p.m.

Angela, could you please move my post of today which I erroneously entered under the September 20th blog and move it to this one? Thanks,

Pat

October 5, 2011 10:27 a.m.

Dear fellow caregivers. I haven't been able to spend time on the blog recently as my husband's dementia has landed him in the hospital for 15 days as they tried to stablize him after adverse effects from withdrawal from Haldol. I am desperately seeking any information that you can share about your experiences. He SCREAMS out incessantly, day and night until he is totally exhausted. The withdrawal has caused him tardive diskenesia which is the clenching of the jaw, and neck muscles. Unfortunately, it happens 24/7 and the only peace he can get is a few short hours of sleep from his total exhaustion. As I am writing this , he is screaming out and has not stopped. He even talks in this &quot;screaming voice&quot;. His gero/psych doc says it is behavioral and she doesn't want to give him medicine because he is so sensitive to meds that they &quot;piggy-back&quot; on him and cause him to go into a different state of confusion. If you have any ideas or gimmicks that might help it would be great. I have tried the music with earphones, soft comforting stuffed animals, &quot;ben gay&quot; rubs on his knees and wrists because fo the &quot;Parkinson-like&quot; symptoms he has developed. On top of all this, he is blind and can't really communicate his discomfort. My heart breaks for him because I don't know how to &quot;fix it&quot;. Please please write if you can help. Bless you.

Pat

September 28, 2011 6:57 p.m.

CAN SOMEONE PLEASE TELL ME WHERE TO GET ANY INFORMATION ON THE LATER STAGES OF ALZHEIMER'S. NOT THE LAST STAGE BUT JUST BEFORE THE LAST STAGE. I HAVE ASKED MANY LIBRARIANS AND OTHER SOURCES I NEED HELP PLEASE. MY HUSBAND IS FAILING MORE QUICKLY THAN OTHERS I HAVE READ ABOUT HERE, SO I PLEASE NEED SOMETHING TO READ AND UNDERSTAND THE STAGES HE IS IN NOW AND WHAT TO EXPECT.

Glenda

September 28, 2011 9:03 a.m.

I find most of the comments to be similar. One that I find to be of concern is about &quot;friends&quot; and &quot;true friends&quot;. What I have found is that some that we have considered true friends and who seem to have become fair weather friends is that they are afraid. I do not hold it against them, I try to understand. AD is a perplexing illness that nobody, not even Drs. can understand. My wife is in a memory care facility. I visit her everyday. None of the other residents are true copies of each other. Each one exhibits some different symtom. I have learned to be flexible and treat every day as a day to learn something new. One of the aides said that she had been working with AD patients for 15 yrs. and had never seen anyone like my wife, so even the pros keep learning.

Millard

September 27, 2011 11:30 p.m.

To Nick whose wife has frontotemporal dementia: My husband has this and I feel angry and frustrated too. FTD is so difficult to deal with as the person you knew seems to be gone, and another one--who you never would have married--has taken their place. I tell myself he is in there somewhere and try not to forget what a wonderful person he was before this disease. At times I've had difficulty remembering what he was like before. But if I don't make myself remember I will lose compassion, which has happened so many times. I am always asking him, and God for forgiveness for my frustration, anger and impatience. I'm getting over feeling that he has to be included in every social event I go to. I can't enjoy myself when I'm constantly worried about what he will say or do next. Our social life together is getting smaller and smaller, but we have a few people who are true friends and that is what counts anyway. Don't beat yourself up, Nick, because of your feelings. It's not about feelings but about doing the right thing. All we can do is our best in the moment, and ask God to make up the difference. Just that you bothered to ask for hints shows that you are a concerned and caring person. Do one nice thing for yourself every day. The Bible says that anyone who lacks wisdom should ask God for it and he will freely give it to anyone who asks. I have experienced this in my life and in others, and why do I not learn to do this first? I am not in tune with the "still small voice of God".

Karla

September 27, 2011 3:36 p.m.

We have just came home from yet another hospital visit. The second one in a month. He is having what I am calling seizures but the doctors say it is his alzheimers. Sunday morning he woke me up screaming as if he were in severe pain, started the shaking and gurgling then past out and was unresponsive to me and the paramedics. I am told this is a part of his alzheimers. I have never heard or read of anyone doing this before. Just checking for any feedback as to if this has happened to any others.

vicki

September 27, 2011 12:24 p.m.

Hold down the CTRL key while scrolling the wheel in the middle of your mouse.

Shirley

September 27, 2011 9:28 a.m.

My dad is 87 with dementia, and my 91 yr old mom (ok, still drives, etc.) stubbornly insists on taking care of him most of the time. He is up and down all night, and 'camps out' in the bathroom during the day, so she is exhausted/up and down the stairs, coaxing him to come down for meals--whole schedule is mixed up. We are finally getting her used to the periodic health aide concept. I am in town and visit a lot, and constantly worry about them. Thank you all for your comments--they are helpful.
MaryAnn, call a local church--a lot of them have a parish nurse or outreach person, and they will make home visits and maybe put you in touch with some other church members who will visit, so you don't feel so lonely. I'm thinking of you. God Bless.

Carol

September 27, 2011 1:37 a.m.

Dear Angela Lunde, I, too, am having trouble reading the letters here as they are very small. I tried the method to enlarge that you mentioned for someone else and it did not help much. Is there a way to send it to us with larger characters? Thank you so much as it is a life line for many of us.

Virginia

September 27, 2011 1:22 a.m.

This is for Kathleen whose mother won't bathe or change her clothes. You need to have an understanding that they have lost the ability sometimes to clean themselves. They don't think they are dirty. I take all my husband's clothes after he goes to bed to the washer.He loves wearing the same thing every day. When something gets worn from wearing and washing. I do not ask, I just toss it in the dumpster. And replace it with something new near the same color and style. He is happy. If you establish a routine and give her lots of assistance (maybe she doesn't need it every day)with a happy face on, she will be more receptive of your ideas.
There is no right way....but don't give up. Try speaking to her doctor about your frustration.
This blog is helping me a lot so keep reading it - sometimes more than once.

Virginia

September 26, 2011 11:54 a.m.

Since I have a family history, I have taken care of a loved one with Memory Loss issues and it can be very osolating. I also am concerned for my own health and well-being to be able to he healthy in my later years. To slow any progression for my own brain benefit - I include in my diet CerefolinNAC to include the L-Methylefolate - an active form of folate that the body can use efficiently. I have worked with this product in the past and found more information at Cerefolinnac.com in case this is not familiar to you or your doctor. Taking care of yourself while taking care of a loved one can be overwhelming.

AmalieE

September 25, 2011 6:01 p.m.

i am caring for my 90 1/2 year old father. I get no help fomr three siblings. Two live out of state and one lives close. I moved from out of state to care for Dad. I have such angry feeling towards my siblings. I keep telling myself that this is my choice to help Dad. THey certainly don't seem to understand what i am going through with him. I ahve aksed for there help but they always have some excuss as to what is going on in there lives. I thinks...gosh..i gave up work and a life to come to take care of Dad. He is wheelchair bound and has dementia as well as other health issues. I feel sooooooooooo tired adn worn out. I ahve been doing this for over two years . I feel so isolated and lonely. I ahve not lived in this area for 40 years and ahve no friends here. Nobody stops over at the hosue. It is so lonely. I am not sure what to do or who to look to for help. Any suggestions? There is not alot of finances to pay for help.

Maryann

September 25, 2011 2:20 p.m.

Cath T
Older people bruise very easily. My husband is on the anemic side and he always has bruises. Mention it to the dr. next time you go.

Shirley

September 25, 2011 2:18 p.m.

Sabine: You can make the print larger to read by pressing down on the CTRL key and scrolling the wheel in the middle of your mouse. Hopefully that will work for you.

Shirley

September 25, 2011 12:15 p.m.

I have a question that I am posing to other caregivers that I just thought of today....do any of your loved ones ever have bruises on their arms? I am wondering if my mother might be getting up at night and walking into things? Any others out there who have seen this?

Cath T

September 24, 2011 4:53 p.m.

I thank you for having this blog. The reason I turn to strangers for added comfort with dealing with the challenges of my mother's symptoms of alz is because yes, family and friends seem to prefer to be in denial which I really think is cruel and unfair to my mother and me and my own immediate family. It really baffles me to discover just who our real family and friends are.....it really has been quite the wake up call and I thank you all for your ideas and sharing of stories. I am also joining a caregiver support group this week....will share some ideas with you all from my new group of friends. I think it's important to realize that they seem to really live in the present which is how we've been approaching this.

Cath T

September 24, 2011 1:26 p.m.

Funny how you can turn to strangers &amp; find comfort &amp; help in time of need. My little 89 yr od mom has dementia. She also has incontinence. No one else in our family will address this problem with her. Another care-giver posted her comment to how she approached her dad when he would soil his pants. simply saying 'Dad I dont mean to embarass or demean you, but it seems you have wet your pants. you need to change your clothes.' This approach with my mom has really helped. Thank you care-givers for your encouragement &amp; support. It seems that uninvolved family members is a universal issue. Why is that?

Marie

September 24, 2011 11:02 a.m.

@ Catherine - September 23, 2011 9:46 a.m.... do what you can. Hold onto what you can, be there for what you can... hold on to 'yourself'. You cannot help if you cannot take care of yourself. Hang in and breath...blessings and strength

Rachel

September 24, 2011 10:41 a.m.

I am 91 years old and have a son who is 62 years old with early onset frontotemporal dementia. He stays with me several days a week to give his wife a respite from his care. How can I oxccupy his time with me? He cannot communite with me other than a few words and is unable to do simple tasks. Other than watching TV when he is with me what tasks could we do?
Heartsick mother

mother

September 24, 2011 9:13 a.m.

Due to discovery of porno sites using My Perfect Wife as title, I have changed my caregiver's BLOG address and invite anyone to view and read at http://alongdarknight.wordpress.com. Here I have shared my experience as a caregiver of my wife with dementia.

Philip

September 24, 2011 6:59 a.m.

To Jean who wrote to Diane 9/22.--It warmed my heart to know that someone else felt thesame as I. I'M gratful for what we still have.&quot; I'll bear the sorrow that comes tomorrow, but borrow none today.&quot;I live each day as unto the Lord and &quot;rejoice&quot;for He is always near.&quot;I can do all things in Christ Jesus who strengthens me&quot; Phil.4:13 Anne

Anne

September 23, 2011 2:34 p.m.

this is more of a request, I have difficulty reading this, could the print be made larger or bolder? I am 84, my husband is 93, I am trying to learn as much about dementia as I can. Thank you.

Sabine

September 23, 2011 11:58 a.m.

Thanks everyone for your stories and solutions, they are so helpful. And most of all Thank You Lord for your help and patience with us the caregivers.
Joe

Joe

September 23, 2011 9:46 a.m.

I'm so tired, very very tired at this moment, not sure even what day it is. However as my dad has just finished another evening with being up all night (and not even being aware)I wonder just how tired he is feeling. We go through this night after night, last night being the worst thus far. I might also add that my dad has stage 4 prostate cancer which he has battled the last 11 1/2 years. The stroke hit him 6 weeks ago. He was driving up the street to our church on a Sunday when it hit him. One of the parishioners say him just sitting in his car and rescused him. he remembered his phone number and address, the man drove him home. We called the ambulance and within hours, I guess you could say, the father that I knew was gone.. Within two days we got the call from the hospital they were moving my dad to a so called rehab center, we were never asked, just told an hour before the move was to be made. This rehab was a joke. While he was there he suffered a severe muscle pull in his chest, followed my one in his knee two weeks later... My father never lost the ability to walk or talk, he could eat. His sight in his left eye was impaired as well as his memory.For twelve hours a day he sat in an upright chair, alone unless we were there, which my mother got there every morning at 11AM and would stay till 8PM making sure he ate his meals,as they would bring in the food and just leave.He is home.My heart is breaking, I am losing my best friend....

Catherine

September 23, 2011 9:12 a.m.

it is sad. but you have to treat them like children (in a respectfuly way). Why? Because their minds are no longer of an adult mind. In many ways, we are their minds.
My mom, who as AD, often talks about her mom in the present. I don't tell her her mom is dead. I talk with her as if her mom is living. I tell her that her mom lives with her other child and she is being taken care of. I even tell her we will see her tomorrow. IT seems harsh, but it is better than having her relive the hurt over and over again. She will forget anyway. It is better to have her with peace and comfort rather than tears. Sometimes certain situations dictate if truth is the best thing or not.
Brushing teeth - my mom just will not brush her teeth as often as i would like for them to be brushed. Every time i say &quot;lets brush our teeth&quot; 95% of the time she will say I already did. I have them cleaned every 3 months by the dentist and either floss or brush when I can in between. Pick your battles. Some of the issues that we think are problems, are really not that big of a deal. My mom is on seroquel and Xanax when needed. It truly helps with the anger, fussing, aggressiveness, etc. At first I didn't like the pills; however, when you think how hard it must be for them to be in that state you do do resort to the pills. it makes them feel better as well. it helps calm them. Can you imaging what they must be going through. Its hard to even think about it.

Lynn II

September 23, 2011 9:06 a.m.

I am caring for my friend who was diagnosed with early advanced Alzheimers. I am a nurse and care for Alzheimers patients and have never seen this type of problems. No concept of money, overdrawn at the bank. Makes up lies to compensate for memory loss and problems. I also take care of my Mother who has Demntia which is progressing and don't quite know what to expect. His children live in Ohio and aren't helping. Can you share some advice or where I can find information about this type of problem?

Virginia

September 23, 2011 8:29 a.m.

Is there some way to make my family members' denial go away? It seems that I am the only one who see the dangers that surround my dad. He has no judgment anymore. He tried to heat something on the stove that was in a tupperware container. Everyone just laughed about it. Mom lets him walk up to the road alone to get the mail everyday. Physically he can do so, but the road is extremely busy. Yesterday someone called me to say he was standing at the edge of the road watching the cars go by. I was the only one who was concerned that he might get dizzy and fall into traffic or just walk into the street. What is wrong with my family members?! I don't like treating dad like a child, but what else am I supposed to do? It seems an accident needs to happen before my family opens their eyes. I'm so frustrated right now!

Karin

September 23, 2011 3:00 a.m.

This newsletter and blog sharings are a big help to caregivers who is not alone to face uncertain/strange behaviors of the beloved patient. Reading the blog I find regardless of race, colour, nationality, religion, once acquired the sickness, most patients behave similarly. Understanding and love seems to be the best cure, anger and frustration will not help any party, so it is a daily tolerance test for every caregiver. Life is not too dull if we treat the beloved patient like a &quot;super baby&quot;, to be cared for with lots of respect and in the way we treat a naughty baby/toddler.

Sooty

September 23, 2011 1:15 a.m.

Ginny -mRobinHood could shoot any straighter than you di. Pat Robertson made the comment from what I read that it was OK to divorce and remarry when an AD patient get to the stage they don't know you much like a death. Well, I thought since that is not biblical Pat must have smptons of AD and forgotten his Christian marriage Vows - for better for worse, sickness and health...till death do us part. Well in my opinion death means DEAD. The bible says wheb a man and woman marry they become ONE. In this humanist world selfish desire blind us to the best way humanity can live as given in the Holy Bible. A Promise Kept is proof you can survive caregiving till death. Those that don't agree may I say picture yourself in your spouses positiom - cast away while still alive.
I speak from experience 48 yrs marriage, carring for my wife since 12/06 only left her 31/2 hrs. Now I check to see if she has left the roo, for eternity when I can't hear her labored breathing.
Just another thought for brushing teeth - try a battery powered rotary brush - ot worked for me when nothing else did.

Gary

September 23, 2011 12:24 a.m.

Hi there and thank you to the people out there that post information that has helped while care giving a person with Alzheimers. I was thinking back over the last 2 and a half years and realised that the only thing that has significantly helped was just to show my Mom that I really care and love her very much which is all she really wants. The other big help was actually stopping as much of the medication that we could with the doctors assistance and now Mom takes only the half pill for Memory (which was to keep her stable at the time) without a whole load of pills she is better off and started to speak again even if it is only a few words and a bit mumbo jumbo sometimes you just agree and let her try to talk to you even if it makes no sence at all she in her own mind has communicated with you. It is sad to see how many of the patients with the same disease who are all at differing stages behave as the disease progresses, and they get older, but being kind and listening and talking to each person in the home where Mommy is daily I can see that love, kindness and respect for each one of these patients is all they need with the care that is given so specially at that home.

Merle

September 22, 2011 10:42 p.m.

Samantha - I heard from a friend that when her family member starts asking about another family member who has died, she diverts their attention quickly to another subject or shows her something to divert their attention. She was told that if you remind them the person has died, they will go through the mourning again. (and you too). Since everyone is totally different, it may not work, but just trying to get them involved in something temporarily that they like may amke a difference. They may forget what they asked. It is mind boggling though what they will remember one time and not another. It is a disease with constant surprises that keep you on your toes at all times. When we were still caregiving for our mother we just took one moment at a time. You can't plan for anything much past that. Our thuoghts are with all of you.

Martha

September 22, 2011 9:55 p.m.

To those struggling with getting your person to brush teeth, I have had success with toddler toothpaste. I have to put the toothpaste on the brush, put the toothbrush in her mouth. She doesn't know what to do with the brush initially, but after I put my hand on top of hers and get her going she can manage to brush some..after a fashion.. Virtue of toddler toothpaste is that she can swallow it and rinsing and spitting isn't required. Hopes this helps someone out there.

Linnie

September 22, 2011 9:38 p.m.

Mary Ann: My heart goes out to you. Like you, I am a caregiver for my husband and as in your circumstance my husband developed symptoms in his 60's. I love this man with my whole heart. His illness has not diminished my love. I long for his suffering and my own to end. Yet know that his death will leave a hole in my soul. May God bless you with the strength you need to get through this final step of your shared journey.. though without knowing you at all, I believe you will be okay, because you have had the strength to move through all the tough stuff that has no doubt been along your road. God Bless all out there who have AD or love those with AD.

Linda

September 22, 2011 9:34 p.m.

Last Sunday was my mother-in-law's 91 birthday. I made a cake but did not invite anyone to come over. I wanted to see how many of her kids and grandkids would remember her on her birthday. She got one card in the mail from a friend (i called and invited her). One grandaughter showed up and her sister. Why do family forget their elders. They can't be that busy to not even call or come to see her. She has been with us for almost three years. I can count on one hand the amount of visitors she has had.

helen

September 22, 2011 8:41 p.m.

Hi! Thanks everyone! Each post brings me support. For those of you dealing with teeth brushing - I always sent gum to camp with my son, when I thought he might now brush his teeth. ? don't know if that will help you.
Thanks Gary for the song - it's right where I am today. I went to a Dr. two days ago. In the waiting room I met another couple. This man is much more advanced than my husband with either frontal temporal or vascular dementia and is 65. When I thought about this other man's wife having so much more to cope with than me, I felt my problems were not significant. I decided maybe I should just be thankful for the problems that I have, not the ones that will come.
That worked until today when my husband had a major meltdown when the days plans got muddled and he couldn't go where he wanted at exactly the time he wanted. This lead to a self esteem breakdown and a verbal lashing for myself and my son. As a result I didn't feel like a wife who wanted to deal with this over and over.
I don`t know if I can be a caregiver living with my husband in this awlful journey. This disease is so frustrating. I think I can cope, or all is going pretty well, and then there is a breakdown like today, and I just want to live elsewhere. I would say my husband is in late early stages. I know if I just pretend today didn`t happen it will be best for him. As getting upset with him just lowers his self esteem and makes him think all I do is nag. Thus I can only bennefit by forgetting.

Lynn

September 22, 2011 8:34 p.m.

thank you, again, for your column, which is - as always - so very timely and emotionally helpful. it seems like the mayo clinic alzheimers newsletter arrives in my inbox just when i'm in much need of affirmation / comfort for my overwhelmed feelings of sadness, frustration, guilt, grief, fear.

andrea

September 22, 2011 7:51 p.m.

I have recently become aware of a clinical trial the National Institutes of Health is working on with insulin inhalers that is showing positive results. Is Mayo Clinic Rochester going to be involved in clinical trials in this area?

barbara

September 22, 2011 7:10 p.m.

Thankyou for your words which gave me much comfort and have helped to take the edge of my sadness. I gave up work some 7 years ago to care for my dear Mum who has since passed away and for my darling Dad who is now in a nursing home. I usually spend a few hours every day with my Father to make sure his needs are met and to give him a sense of companionship which has always been so important to him and still try to take him out once a week even though we are now reliant on a wheelchair taxi. I now find myself yearning for the days when he could transfer into the car and was sufficiently mobile that we were able to go out 3 to 4 times a week. Despite his vascular dementia and alzheimers he still loves social contact most of the time and doesn't get sufficient visits from the many members of our large family, which breaks my heart as there is no question that he feels it. His eyes light up when one of his grandchildren come to visit with their babies and toddlers. Living on my own is also isolating and it is often difficult to rise above the emptiness and sense of loss I am feeling, which are not feelings you can share as most people don't want to hear negative things, so you have to be careful not to express how you are really feeling a lot of the time, and put on a smile and pretend all is ok. I have been quite unwell this week and struggle with the guilt of not being well enough to be with my Dad as I know how much it means to him. Thanks to you and Mayo for this site.

Jenny

September 22, 2011 5:43 p.m.

Dear Angela, your words came to me today at a time of great sadness for me as I just put my 67 yr old husband in Hospice Care. I thought it would make me feel better but it did not. Reading your words relly helped me at one of the lowest times I have experienced while caring for my very &quot;young&quot; husband who is suffering with this dreaded disease. I am blessed with many people who care and reading the posts on this website has always been a blessing. thank you for offering this website for caregivers to share. God Bless you and all of us who are caring for someone with any kind of disease.

Mary Anne

September 22, 2011 5:11 p.m.

My thanks for the privilege of communicating with strangers - we are no longer strangers - we are learning sacrifice, patience, and so much more, - together.
Recently a televangelist was asked if it was okay to divorce a spouse who had Alz. He said yes. This was broadcast worldwide and I wonder if the man has a clue about this disease. Is this an exception to the golden rule? Do we divorce if a spouse gets cancer or other terminal illness? Or do we love enough to learn all we can, do all we can, keep ourselves mentally, physically, and spiritually healthy and face the facts.
So....I got out my &quot;36 Hour Day&quot; book and re-read some parts because my husband of 58 years continues to decline with vascular dementia. I've never had anger, just bewildered as to why some family members &amp; ex-friends distance themselves from the friend, father, and provider who has memory loss.
Another booklet, small but powerful, is &quot;A Promise Kept&quot; written by Robertson McQuilkin in 1996 who eventually resigned as president of a college to care for his wife until her death. It's a beautiful book showing how &quot;weakness generates strength, servanthood births freedom, and joy is found in a promise kept&quot; (his words) &quot;for anyone who has ever loved&quot;. My prayers &amp; hugs for all caregivers.

Ginny

September 22, 2011 4:28 p.m.

Yesterday I felt happiness for the first time in I can't remember when. I'm not sure exactly why...could have been that my husband didn't fuss at me for having our daughter come stay with him while I went to lunch with a friend. Was it because my friend spent a little longer time at lunch than usual? Perhaps because my daughter brought along some doorknob covers that will keep my hubby from going outside and I felt such an overwhelming sense of relief. Perhaps it was a combination of all of the above. I only know that I felt happy.
Today my husband is back to fussing at me and tomorrow a respite care giver is coming to stay with him...sometimes I wonder if it's worth the flack I have to put up with from him to have an hour or two respite two days a week. On the other hand I have no way to go grocery shopping or tend to other matters, let alone, have some time with friends. It's a dilemma. Everyone says...&quot;Take care of yourself.&quot; I know it's good and healthy to do so. But it's so difficult to listen to him fuss when I get home. Oh well...part of the journey, I guess.

Ann

September 22, 2011 4:22 p.m.

My 88 year old Mom with AD lives with my husband and me. Recently she has forgotten that my father died 20 years ago. She asks me about him and I tell her and we both sit and cry like he just died today. She goes through the mourning all over again. This week she has started asking when he is coming to get her to take her home. I avoid the subject but she is determined to go home to be with him. I assumed she would forget the next day but it has been 5 days and she is still looking for him to come and get her. Should I keep explaining about her husband dying and watch her cry every time or should I let her think he is still alive? Both options seem cruel. I need help.

Samantha

September 22, 2011 4:22 p.m.

Diane...I am going on 6 years with my husband's AD. I understand your reaction. Early on as I was processing this whole thing, I decided that I could not live my life in fear of what was coming. I decided not to let tomorrow rob me of today. So instead of worry about what I would do when he could no longer....(fill in the blank), I decided to be grateful for what he could do, and how we could interact. I keep our life as normal as possible. It is not so easy to travel any more, but we have taken some great trips to see and be with family. We were even able to vacation again with summer with extended family. It may not be as it was, but it can still be good. I try to joke and tease my husband when he gets down. Sometimes I just sit on his lap. Even if he is not initiating, he still enjoys your companionship. Philippians 4:4-7 has gotten me this far, and will take me to the end.

Jean

September 22, 2011 4:18 p.m.

Angela, if your blog could have a link for sharing on Facebook, I would post this article and others I have read here so that many caregivers could read this. I believe they would be mightily encouraged by your posts. This particular one really expresses The heart of the matter. Thank you.
Joan
CaregiverEncouragement

CaregiverEncouragement

September 22, 2011 4:06 p.m.

My Mom has alzheimers and 6 months ago had a stroke. She is now in a nursing home. Before her stroke, the only way I could get her to wash her hair, do her finger nails, or clean her feet was to tell her that we are going to play beauty shop. If I told her to wash her own hair or do her own nails, she really struggled to do that because AD had caused her to forget what steps she needed to take to do those things. But she LOVED playing beauty shop. She would let me wash her hair in the kitchen sink, she would let me soak her fingernails in a dish of soapy water, and she would let me take off her socks so she could soak her feet in a foot bath. Rolling and blow drying her hair, fixing her nails or painting them took quite some time but she enjoyed it. She had lost so many abilities that finding something to do together was becoming increasingly hard. So playing beauty shop gave us something to do together besides cleaning her up.

Marchelle

September 22, 2011 3:55 p.m.

It's so hard watching my dad deteriorate. He was once at the top of his field. He traveled throughout the US and Europe consulting and aiding those in his industry. This morning my mom had to show him how to put on his pants because today it just didn't compute.
My dad has dementia of some sort. My mom and his doctor don't seem to care to diagnose what particular kind. He can't be left alone anymore. He also doesn't like to change into fresh clothes as some of the other posts indicated, and he gets angry when she suggests he wear something else. She's taken to doing laundry in the middle of the night while he's sleeping. It's frustrating to see this happening. There's so much she deals with and we feel we can't help enough.
My brother and I take him during the day to give her a break. I really am more concerned with my mom as the main caregiver because my dad has no clue how much stress she is under from caring for him. She refuses to take him to an eldercare facility during the day. They have support groups for caregivers and she refuses to go to anything like that as well. I am at a loss. How do you get someone to go to a support group who doesn't believe in that sort of thing?

Sometimes, you just have to take control and take off the socks! It is for their own health. Your mom having cavaties could be a big reason why she won't brush her teeth. You just have to take her to the dentist. Sometimes you have to control the situation in a non-demeaning way. I understand. But you can't her her walking around in urine/feces soaked clothes. She can develop a urinary tract infection which will surely cause you more problems. That is my take. She might get mad at you but that is ok. She is going to get made anyway. take them off when she is sleep too. hope this helps

Lynn

September 22, 2011 2:21 p.m.

My 78 yr. old mother was diagnosed with Vascular Dementia 2 yrs. ago. I am the only sibling of six who lives in the same city as my mother so bulk of her care falls on me. We are doing our best to help her stay in her home, but it's a daily challenge due to her refusing to cooperate in keeping her safe and clean. Biggest problem is her hygiene. She absolutely refuses to brush her teeth and bathe. It's a battle for me to get her socks off to wash her feet when I take her to a podiatrist. Because she won't brush her teeth she now has cavities in all of them. She'll wear the same urine soaked/feces smeared clothes no matter what I do or say. I'm desperate for any help anyone can give about working with my mom's refusal to keep herself clean.

Kathleen

September 22, 2011 2:10 p.m.

My husband is 78 with AD and I am 73, I no longer have myself to take care of, but now I have a large child to care for, also.I have all the decision making that he as a man used to do.
Who to hire to fix what, and writing out the checks for bills. It's liike doing my job and continue on to the next job, his.
All I can say is I am so tired!

Angela C

September 22, 2011 2:04 p.m.

Being human, we have a nature within that drives us to reach out - much like a child - out for help and a sympathetic ear. Crying out much like in the old negro spiritual:
Nobody knows the trouble I've seen
Nobody knows but Jesus*
Nobody knows the trouble I've seen
Glory hallelujah!
Sometimes I'm up, sometimes I'm down
Oh, yes, Lord
Sometimes I'm almost to the ground
Oh, yes, Lord
Although you see me going 'long so
Oh, yes, Lord
I have my trials here below
Oh, yes, Lord
If you get there before I do
Oh, yes, Lord
Tell all-a my friends I'm coming too
Oh, yes, Lord

Gary

September 22, 2011 1:49 p.m.

I am caring for my mother who was diagnosed with ad in 2007.she is up a lot at night and does not know that it is time to sleep.I have a baby moniter in my room so i can hear her if she needs me. She does talk a lot and i am a very light sleeper so i have very disturbed sleeps,which is making me very grumpy.She sometimes will get out of bed at all different times at night and start to get herself dressed.I come down to her room to tell her it's not time to get up.She has no perception of time.She eventually goes back to sleep but it's not for long any suggestions on how to deal with this?
Thanks

Laura

September 22, 2011 1:41 p.m.

Diane I feel your pain - my husband was diagonosed at age 57. He was working in Law Enforcement as a Captain. He started to have times of memory lost and it go so bad he want to see a doctor. In the first appoinment with our Primary Care Doctor Andy actual broke down and cried. He had so many tests and saw so many doctors before like you - I was sick at my stomach, and felt like I was going to pass out. As I held on my husband as we walked out - all he said - well I guess it's time to retire. I really don't think he really understood what was going on. In the beginning when he talked to people he called it &quot;his memory problem&quot;. Now at 62 he has bcome a child hisself. He no longer really knows what is going on around him. My daughter and her 16 year old son moved in with us. She gave up he job to be with him during the day so I could continue to work. We had so many plans for our retirement.Things we wanted to do and see.Now I continue to work not only because we need the money but to get away from the house and the responsibilites there. I did not picture that I would be washing my husband's bottom every night to make sure he is clean before he goes to bed. It seems like that he is slipping away from me everyday. He likes to hug me - but I miss the way that we were so close - we talked everything over from our jobs to our daughters and grandchildren.I don't know what the future brings - but I will be with him all the way loving him even if he doesn't know it.

Linda

September 22, 2011 1:40 p.m.

Mary Ann - my problem was and still is keeping my mom bathed, teeth brushed and hair washed. All I can say is that i stressed myself out trying to keep her as I would keep myself. You have to pick your battles. I bathe my mom 2 to 3 times a week. When water doesn't work, I use wet wipes. I focus on the main areas (underarms, pubic area) with water and generally use wipes to wipe down her legs, arms, etc. Don't forget to check the ears and around the neck. Don't forget to be patient. When I change my mom's clothes I tell her softly &quot;lets put this on, becuase i have to wash this piece. Eventually, she will let me do it. Be creative, be patient. By &quot;Dry Shampoo&quot; for the hair. Tressume' Dry Shampoo (if Im spelling it correctly) works wonders.

Lynn

September 22, 2011 1:15 p.m.

Angela, thank you for your insight- as I sit here at my office the tears come - take a deep breath, read the comments and say okay, need to move forward - one day at a time and pray!

Kathleen

September 22, 2011 1:14 p.m.

My problem is getting my father to bathe and change his clothes. How does one accomplish this?

Mary Anne

September 22, 2011 12:54 p.m.

As my husband slip further into AD, one of the things I miss the most is having a good verbal agrument or disagreement with him. He is very bright. I wouldnt always &quot;win&quot; but he was a good sparring parntner and we could challenge each other's ideas. Thank goodness for journaling... With journaling,once in a while, I even let go and revert to the old playground zinger...&quot;What are you STUPID!&quot;

Sue

September 22, 2011 12:51 p.m.

you know what I miss the most? My husband walking up to me and saying &quot; I love you my sweet lady&quot; He does say I love you just before he goes to sleep each night!

lee

September 22, 2011 12:49 p.m.

Your comments brought me some peace as I read it. thank you.

Nancy

September 22, 2011 12:49 p.m.

Diane... I understand what you are going through. Thirteen years ago my husband was diagnosed with Alzheimer's/Frontal Temporal Lobe Dementia. My world was falling apart. I joined a support group and sought out some therapy for me. It has been a slow progression but is now at a point that I will soon have to make some serious decisions about his future care. You have to keep yourself healthy, strong and able to cope for your husband. It has been a long journey for me and I will continue what's necessary so he is taken care of. It's important to be surrounded by people that support you through this difficult time. Even though my husband has seriously progressed, he still thinks enough to thank me and let me know how he appreciates me taking care of him. That means everything and keeps me going. Just know that you can only do the best that you can do in spite of this horrible illness. Be forgiving to yourself for the times of frustration, lack of patience, etc. Wishing you and your family inner peace and strength.

Judy

September 22, 2011 11:57 a.m.

My grandmother developed Alzheimers in her 80's. She died within 6years of that. My mother developed her in her late 60's early 70's, still alive but getting worse.
My brother....he's 52. Just got diagnosed with Alzheimers and Dementia....
Im 45...will I be next? It seems to regress in chronological age in my family. Which one of my sibblings or me will be next?
I very much want to find more information about early onset Alzheimers and why is it that it is more common for Doctors to refer to it as an elderly disease? My best friends Dad died of Alzheimers at age 56! Just 4 years ago. How come we dont hear about this more in the news?
I want to be tested somehow to figure out if I am at a greater risk of developing based on my family history. But when I asked my PCP she was like, Nah, you dont need to worry about that. Of course, easy for her to say she's only in her early 30's.
So, any doctors reading this who care to find a guinnie pig Im here. What ever tests need to be done to figure out what can be done..for research..for myself..and for others.

Olga

September 21, 2011 6:45 a.m.

You wouldn't be normal if you didn't feel scared and/or depressed at times, Diane. I was 59 when I first noticed my wife's AD symptoms but she wasn't diagnosed with EOAD until 4 years later. I have three suggestionsyou may want to consider: First, get yourself into a caregiver support group, preferably one that meets weekly just for spouse caregivers. My second suggestion is to go to a terrific website just for people like us. It's solely for spouse caregivers ... www.thealzheimerspouse.com. It's a great place to learn a lot from other spouse caregivers! Also, if not already doing so, you may also want to consider maintaining daily or weekly or monthly logs about what is happening to your husband, to you, and to your family. For me, writing is a great way to vent, to clarify my thoughts, and is wonderfully therapeutic as my wife and I go through this journey. Good luck, Diane.

Allan

September 21, 2011 1:12 a.m.

I am only 52 years old and my husband was just diagnosed with early onset Alzheimer's. We have two daughters, ages 22 and 18. We were looking forward to retirement at some point and rocking our grandchildren when that time came. After 23 years of a wonderful marriage, I now live with a man I take care of like my children. I do not feel sorry for myself......I am sad, angry and upset as I watch this brilliant man slip away from me. I feel so incredibly alone and isolated. Sometimes I am so depressed it hurts to breathe, yet I must carry on and take care of things.
I am a nurse manager and often see people come in and out of our clinic for their appointments. I see caregivers bring their spouses in that have Alzheimer's. Not once did I ever stop to realize how incredibly painful this disease can be. I now walk in those shoes and know what it is like to hear the diagnosis of Alzheimer's while sitting across the desk from the doctor. While exiting from our appointment where my husband was diagnosed, I recall my heart pounding, feeling nauseated and on the verge of tears. As it turned out, my husband did not seem to understand what was going on and was only interested in where we were going for lunch. I was the one that realized how drastically our lives had changed and was frantic about what the future held for our relationship and future together. Will I get to see my husband hold his grand babies? Will he dance at our daughter's weddings? I am scared.

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